There’s an old arcade game named Whac-A-Mole, in which the object is to bash a fake mole with a mallet on its head as it emerges from one of many holes. The challenge is that just as soon as you successfully whack a mole, it quickly reappears out of another hole. You strike it; it comes back; you strike it again, and again it comes back. You get
the idea.

After a dismal day at various medical appointments in Billings last week, I’ve become convinced that my sarcoidosis is a student of this game. I was initially diagnosed with the disease in my lungs; a few months later, my heart became involved. After a couple of years of corticosteroid therapy, sarcoidosis appears to have re-emerged, much like a mole in need of a good whacking, in my joints. My doctors speculated that my speen and my liver are also currently implicated. It feels as if I make the mistake of blinking — or dropping a milligram or two of prednisone in my daily regimen — my sarcoidosis will pop up in a new organ, with a panapoly of new symptoms. To make matters worse, my medication mallets are soft and spongy, and the sarcoidosis mole is particularly tenacious.

In Billings, I saw a gastroenterologist about the intense abdominal pain and other weird problems (like vomiting blood) I’ve been experiencing. He didn’t have much of an opinion about my spleen, though he was concerned that I have issues in my esophagus and bowels. So on Friday, I get the pleasure of returning to Billings and having both a colonoscopy and an endoscopy (in other words, a tube jammed up one opening and down another) performed in one fun-filled morning. You can’t imagine how thrilled I am at this prospect, especially when he theorized that I might have a fungus growing in my esophagus (caused by long-term prednisone use).

The rheumatologist, who I was sent to see because of painful inflammation in my joints, was convinced the root cause of this new and almost crippling development, was sarcoidosis. She wanted to immediately start me on methotrexate, typically the second course of treatment for the disease after prednisone fails to do the job. So far, I’ve resisted methotrexate because it’s a fairly toxic drug — one that is used in chemotherapy, in fact — with some nasty side effects. But the side effects seem much less worrisome now that I’m struggling to go up and down the stairs, hold a pen, or even open up a cannister of Play-Doh for my son. Plus the “safe” treatment of prednisone not only has left me fat, moody, and with thinned bones, but also seems ineffective once I drop below a whopping 15 mg./day of the stuff. Just as my husband Jay and I had decided that perhaps this rheumatologist was right, and it was time to try something new and that I should start the methotrexate, the rheumatologist came running into the exam room, flapping my latest lab results around like a revolutionary with a new flag, to let us know that my liver is really really messed up and there is no way I can take methotrexate because it impacts the liver and causes problems even for people with perfectly healthy livers.

My internist in Helena and my sarcoidosis specialist in Philadelphia concurred that my liver levels, which continue to worsen every two weeks, are “problematic” in the words of one, and “troubling” in the words of the other, and that I should get a liver biopsy ASAP to make sure it’s “just” sarcoidosis in my liver. In the Whac-A-Mole version of the disease that I have, my liver was implicated a couple of months ago, but was then forgotten in the flurry of new disease activity elsewhere in my body. Now, though, it’s apparently time to position the mallet over my liver and clobber whatever comes out. If the biopsy shows only sarcoidosis, I can likely start the methotrexate anyway, under the assumption that even though the drug is toxic to my liver, it will be wiping out the disease that is weakening my liver. We must destroy the village in order to save it. Or save it in order to destroy it. Or something.
Unlike the arcade version of Whac-A-Mole, the one I’m stuck playing doesn’t end with a chiming of the bell. This is for the long-haul. I need to calm down, take the mallet in hand, and trust that my numerous doctors will figure this out. Nevertheless, Ive been having problems sleeping at night, and not just because my hands and feet are killing me. In the silence of the darkened bedroom, I can almost hear the disease inside me digging its way from organ to organ. I have no choice but to fight this illness on its terms. I can’t tell it to stop being unreasonable and flitting around. If it wants to turn this into a perverse version of Whac-A-Mole, then mole whacking I shall go. But where — and when — does this end if there’s no buzzer?

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1 Comment

This post makes me sad — for you, and angry — that you aren’t getting sufficient pain medicine at a time when at the very least, with all the stress you’re dealing with, you should not be in physical pain as well. It’s bs unnecessary suffering. Where’s the morphine drip cocktail when you need it!